Invisible Illness: A Closer Look at Autoimmune Disorders

Autoimmune disease infographic

source: Pinterest

I am waiting to see a rheumatologist to figure out if I do in fact have an autoimmune disorder, but in the meantime, I wanted to talk a bit about what autoimmune disorders are.

Autoimmune disorders occur when elements of the body’s natural immune system recognize certain types of normal cells in the body as foreign, and the immune system will then attack these cells much like it would attack an infectious agent (e.g. bacteria, virus) or a substance you’re allergic to.  Depending on the particular illness, difficult components of the immune system may be involved.

The exact cause of autoimmune disorders isn’t known, and it appears to be a complex mix of genetics, environment, and probably a bit of just plain bad luck.  Women are at higher risk than men, particularly women of childbearing age.  Family history matters, but it doesn’t necessarily have to be the same illness.  Any type of autoimmune disorder running in the family can boost your susceptibility.  Both of my parents have had autoimmune conditions at some point.

There is a wide array of different autoimmune conditions, some of which people may not necessarily recognize as such.  Type I (juvenile-onset) diabetes occurs because the immune system attacks insulin-producing cells in the pancreas.  Celiac disease is an autoimmune disease in which the presence of gluten triggers the body to mount an autoimmune attack on the intestinal lining (which is very different from a gluten allergy).  Crohn’s disease and ulcerative colitis are also autoimmune disorders that affect the gastrointestinal tract.  Rheumatoid arthritis is autoimmune, unlike the more common osteoarthritis, which is not.  Multiple sclerosis is likely at least in part an autoimmune disorder, and the myelin sheaths on nerve cells are under attack.

What’s involved in making the diagnosis varies depending on the particular condition, and often it’s not easy.  Sometimes the immune system will make antibodies as a way to target the part of the body it’s attacking, and the presence of these antibodies in the blood can aid in diagnosis.  Blood tests for things like antibodies or other inflammatory markers vary in sensitivity and specificity, so it’s often a matter of trying to fit multiple different puzzle pieces together to find the best explanation.

Some autoimmune conditions have quite specific symptoms, but in many cases symptoms can be vague and non-specific, and it can sometimes take years for people to be diagnosed.  Type I diabetes is an example of a condition that can be diagnosed relatively quickly, while celiac disease often takes a long time to be diagnosed.  Sometimes certain symptoms will make diagnosis easier; for example, there is a classic “butterfly” patterned rash on the face that is quite distinctive to lupus, although not everyone with the disorder presents with that symptom.

My lab results show that I have anti-nuclear antibodies, which means my body is making antibodies that target cell nuclei.  The level of antibodies I have in combination with my various physical oddities makes it likely (although not entirely certain) that I have an autoimmune disorder.  The lab also looks at the fluorescence pattern under a microscope, and the pattern they see can be indicative of some of the types of illness that may be going on.  They saw two different patterns with mine, which point toward lupus, Sjögren’s syndrome, or mixed connective tissue disease, among a few others.  I was tested for two more types of antibodies that are more specific to lupus, and those were negative, but around 1/3 of people with lupus don’t have those antibodies.  Lupus targets connective tissue throughout the body, and can affect various organs.  The kidneys are sometimes a target, and this is why Selena Gomez (who has lupus) required a kidney transplant not too long ago.

The hallmark symptoms of Sjögren’s syndrome are dry mouth and dry eyes, due to the body attacking the salivary and tear glands.  Tick both of those boxes for me.  The thing is, though, the dry mouth corresponds perfectly in time to when I started lithium around 6 years ago.  The dry eye matches up exactly with when I had laser eye surgery revision in 2015. I had LASIK done in 2006, but over time my vision got worse, so I had revision surgery in 2015 only on my right eye.  The surgeon wasn’t able to do LASIK, so he ended up having to do PRK surgery, which is associated with a greater risk of complications including, you guessed it, dry eye.  My optometrist is very on the ball (eyeball, I suppose) and I’ve been seeing her for years, so I’ve made an appointment to have her check out my eyes and see if there’s anything funky going on.

Treatment varies from condition to condition, but what holds true pretty much across the board is that it’s a matter of chronic management rather than treatment and resolution.  Type I diabetes is managed by replacing the insulin the body is unable to make.  Celiac disease can be managed by avoiding gluten, but that doesn’t take away the damage that has already occurred.  Many autoimmune conditions are managed by immunosuppressant medications to try to calm down the overactive immune system.  The drugs used for a particular condition would depend on what specific components of the immune system were working overtime in that condition.

I’m curious to see how it will go with the rheumatologist.  My gut instinct is lupus since it seems like it would explain some of the weird things I’ve been experiencing, but it’s really not an area I know enough about for my gut to have any idea what it’s talking about.  So we shall see.

 

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25 thoughts on “Invisible Illness: A Closer Look at Autoimmune Disorders

  1. Bonnie A. McKeegan says:

    I am shocked by the statistics. I wonder truly how much is due to our environment? I wonder if they’ll discover migraine is autoimmune too. Thanks for posting this info and best wishes for solving and recovering from your symptoms!

  2. marandarussell says:

    For the longest time my doctors and I thought something autoimmune had to be going on, and maybe in a way it is, but when I found out about Ehlers Danlos and its comorbid conditions, I finally started to make sense! I hope you find answers!

  3. Meg says:

    This is so interesting, and I love a medical mystery!! I didn’t know that all these diseases were under the main branch of being autoimmune, nor what that meant, so great post!! The concept makes sense now that I think about it.

    Keep us posted!!!!!

  4. wraemsanders says:

    Lupus is tricky and difficult. My older sister has it. I definitely think there’s a genetic link somewhere bc I have RA and so did my grandfather. My grandmother had fibromyalgia. There’s a lot to learn about all of these diseases.

  5. Invisibly Me says:

    Excellent post! Made me chuckle about your optometrist being on the ball, the eyeball! What bugs the hell out of me with autoimmune conditions is the lacklustre testing, if you get any at all, and how doctors and specialists will often stick to prescribed ‘normal’ ranges for things and ignore symptoms, while also ignoring how levels can fluctuate, how there can be false negatives, etc. It makes getting an accurate, timely diagnosis very difficult. That said, some specialists are good and will keep all of this in mind. It’s just important to stand your ground and get answers, which you know. When’s your appointment..? Wishing you the very best for it, sorry I’m a little behind reading this post!
    Caz xx

    • ashleyleia says:

      Still waiting to hear an appointment date. I totally agree with you – diagnostic testing still has a long way to go before it will properly serve people, and symptoms should never be brushed aside.

  6. Isabel says:

    Great post! Just wondering, did you ever get a diagnosis? It took me quite some time to get a diagnosis of Sjogren’s Syndrome, although I had the hallmark symptoms of dry eyes and mouth, plus joint pain. Hoping you got the help you need from your Rheumatologist! Also, check out my blog, autoimmunewarrior.org, if you’re interested in reading more autoimmune-related news.

  7. Vannessa Clanton says:

    I’m currently under a Autoimmune/Autonomic Neurologist in Houston who is using me and dozens more for her research in to these disorders. I found out a year and a half ago I had Dysautonomia. On top of that I have white matter spots on my brain, Endometriosis, P.O.T.S, Scoliosis, and possibly Ehler’s Danlos. Currently getting an appointment with rheumatology to help figure that out. With all of that I’m only 30 and a momma to 3 boys under 10. I worry, with all of these things just now showing up with me, about the future of their health. I know that because they are males it’s less likely. But it’s just so crazy how unpredictable these disorders are, and how they can just seemingly pop up out of nowhere. Thank you for sharing this info, it has helped clear up a lot of my questions. Good luck on your journey! 🦓🥄

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